Clobazam Dose Change

Rayleigh is continuing to have 3-5 seizures a week. Each is still under a minute long. We see Dr. Coleman, her pediatric neurologist, on Friday to ask a few questions, get her weighed and have her physical.

We talked to Dr. Hernandez, her pediatric epileptologist from Cook Children's Hospital, about checking her Clobazam levels. He said that based on her current weight of 19 lbs we can go ahead and raise her dose to 1 full pill twice a day. Dose changes take a long time to take effect on her body so we need to allow 4 weeks. If she is still having seizures in 4 weeks we call back and he will have a blood test ordered through the local DLO lab to check her Clobazam levels to see if we have room to up the dose.

If there is not room to increase we may need to wean her off the Clobazam or try it in combination with a different medicine.

We will ask Dr. Coleman about Topomax (an anti-convulsant medication) and explore more about the Ketogenic Diet. Hopefully we find a medicine/dose that will get the seizures under control fully so we can avoid the Ketogenic Diet altogether. But if that diet works, we can't say no!